Ally Heintz » March 2005 Journal Entries » AboutMyBaby - online baby scrapbooks, photo albums, videos, birth and pregnancy announcements

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Thu, Mar 31, 2005 10:30 PM
Today was yet another one of those days we have become to familiar with. We learned today why Ally has not been feeling so well the last couple of days. It turns out that she has a blood clot in her hepatic vein which is one of the main arteries of the liver.

Ally will be transported tomorrow at 9am to Christiana hospital for surgery that will start at 10am to hopefully remove the clot from the vein. Dr. Dunn will perform the operation in radiology to see if he can save Ally's liver. Ally then will be transported back to duPont to recover.

The worse case scenario is that the clot can not be removed, which then means Ally would need another liver within a couple of days to survive. So, I may become her donor on Monday, if I pass the CT scan which I have yet to take. Again, this is worse case, please pray for Dr. Dunn to remove this clot, and for Ally to have no permanent damage to the liver due to the clot.

We will update tomorrow night after everything settles down.

To any of Ally's nurses reading this, please know we are sorry if we can't make it home by the 11th. In fact it could be longer. We should know more by end of day Friday.

Shane

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Wed, Mar 30, 2005 2:00 PM
Well good news has finally arrived! Ally now has every night and day covered with nursing. This is actually better than when we entered the hospital two months ago. The bad news is the coverage does not start until April 11th. Which means we have this week and next to continue staying at the hospital. But I guess one more week won't kill us, since we have been in the hospital last 12 of 13 months.

Some more good news is that Ally has been for the last week, weening from the vent. Right now we have been reducing her settings on the vent. Later on after we are home, we will start to sprint her from the vent.

Sorry for the delay in Easter pictures, but I will not be able to post them until Thursday or Friday night, once I come home.

Also, remember the Beef and Beer tickets are still available, and selling quickly if you would like to join us. Raffle tickets for the trip to Florida that will be given away are also available. Please call Luann at 610-367-0363 or Judy at 610-367-1543 for all ticket sales.

Thanks again for everyone's continued support and prayers.

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Tue, Mar 22, 2005 9:50 PM
Not much news to report on today. We are still looking to fill our night nursing positions so Ally can come home.

One good note from today is that GI has completely eliminated all of the amino acids and minerals from Ally's TPN fluid. These are some of the things that have been know to cause liver failure. Which of course they did to Ally. So getting rid of them is one step closer to finally coming off TPN forever!

Later this week, we may try some more feeding changes to Ally's diet, for instance changing the strength of the formula from 3/4 strength to full strength. This would give her 10 more calories per cc. Currently she is getting 24cc an hour. Little by little I think we're going to get there. Keep Praying.

Shane

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Fri, Mar 18, 2005 8:30 PM
Well, bad news. Ally will not be coming home this Monday. Not because of any issues with her health, but because we no longer have any night nurses available and our day coverage currently is light. We didn't find this out until today. So starting Monday, we will be calling another nursing agency to see if they can help fill our empty time slots. This news means we could be here for maybe another couple of days or even weeks. Oh, well some how we're going to get Ally home. Even if we have to stay up all night every night until we find the help we need. If you know of any one that may be able to help, please have them contact us via email at aajsheintz.yahoo.com or you can contact our nursing agency, Harleysville Pediatric Home Care at 215-513-7455 or harleypeds@hotmail.com

Besides the nursing issue, Ally is doing well. Jill was a bit upset today about the lack of nursing available, and also missing the chance at seeing nurse Karen this afternoon. Some day we wil bring Ally to Bryn Mawr to visit everyone. Promise, we miss seeing you all there.

Before I go, I am posting another fund raising event for Ally.

Dance/Beef&Beer, Featuring "Record Express"
June 11, 2005
6-11pm
Keystone Fire Co., Boyertown PA.
$20.00 per person

Tickets are going fast, so don't delay.

For tickets call:
Sue at 610-582-2590
or LuAnn at 610-367-0363
Also available at Bause's Super Drug Store,
Body-Borneman Insurance and Everhardt's Garage, Earlville.

During the event, there will also be a special drawing which we will be giving away a 1 week stay in Florida, plus $400 toward your airfare. Trip indlues 7 days/6 nights at Windsor Palms Resort Condo (3 miles from Disney), 1st floor-Full Kitchen, 2 Bedrooms/2Bath-Sleeps 6, Pool-Gym-Tennis-Volleyball-Movie Theatre-Golf Courses nearby. Book your week trip in August, September, or October of 2005.
Tickets for this raffle are $25.00. All proceeds benefit Ally's Recovery Fund. Tickets are available also at the numbers and stores above.

Take Care. Shane

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Tue, Mar 15, 2005 9:30 PM
Ally had another good day. Her feeds are now at 20cc and they also dropped her amino acid levels in her TPN from 3% to .5%. And that is great!! In place of that they are adding some fats to her formula. Also, Ally is almost off her sadation meds. Only a few more days to go.

It looks as if right now, next Monday Ally will finally becoming home. So all of our home care nurses, get ready!! She is a much different little girl then before. Ally needs alot of attention, especially at night. Right now she thinks that time is play time. We are working on changing that.

I also added a few photos from today to the site. In fact, there is one especially for Nurse Karen (read the caption).

Before I go, please mark your calendars because
St John's Church of Boyertown will host a special blood drive - a replacement blood drive for Ally!! Sunday, April 17th from 12pm to 4pm in the Fellowship Hall. You may call Miller-Keystone at 1-800-486-2566 to sign up. Walk-ins will be accepted. This event is just as important if not the most important event we have had yet. Jill and I, now know how much it means to give blood and the life you may save by doing so. God knows, Ally has used many pints of blood to live, now if you could, please help us give that blood back so others will also have the chance at living.
Thank you. Shane

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Sat, Mar 12, 2005 8:00 PM
Well, not much has changed with Ally the last few days. However, there is talk about maybe coming home as early as next week. We will see, don't hold your breath on that one. You know Ally.

Anyway, beside what is going on with Ally today was a great day in meeting a special person. His name is John Maicher. Jill and I found out about him from an artcile this week in the Reading Newspaper. John was born with Gastroschisis, and now is 20 years old. At 18yrs of age John was told he needed a liver transplant and has been on the waiting list for 2years. You can see why his story touched us so much. So much, that Jill and I spent hours searching a way to contact him. So last night after spending time on the internet, we found him. He was one floor above us here at duPont. Imagine that? We spent all this time trying to find him, and here he was right above us.

So we sent John an email asking to meet him, and he kindly accepted. We went and spent an hour and a half talking with him and his parents. Let me just say what nice people they are. We felt as if we had already met them. Jill and I felt after reading John's story, that there was a reason why we were here at duPont at the same time and there was a need for us to meet him and his family. That reason is to help find him a liver.

We know all of you have been reading about Ally and have prayed and sent messages, but now we ask you to pray for John. Give him what you gave us this last year. Your kind words, prayers and support. But most of all we ask you this. . .would you consider saving John's life? Please, Please if you have blood type "A", and would like to make a huge difference in the life of a young man, please consider becoming a living donor and give John the Gift of Life. I know some of you have sent us emails saying you would like to be tested to donate part of your liver to Ally. Fortunately Ally received her gift. Unfortunately John has yet to receive his gift of life and has already been waiting soooooo long. John's father was a match for blood type but a cat scan revealed his liver was not of sufficeint size to donate to his son. Yes it may be an easier decision to give to someone you know, rather than a stranger. But I guarantee, the joy and satisfaction of saving his life would change you and him forever, so much that he would no longer be a stranger, but would now be a part of you. If you would please consider this. It really is fate telling us that we may just know John's donor. We just need that person to come forward.

Remember, to donate a portion of your liver you only need to match blood type and must be between the ages of 17 and 45. If you are blood type "A" and seriously considering donating, please email Jill and I at aajsheintz@yahoo.com and we can get you in contact with the transplant team here at duPont. There is also a link listed on our site for John Maicher's website. Thanks for your conisderation of life for John, and all your prayers. We know this is what Ally would want us to do and we could not imagine Ally having to wait for years to recieve a liver transplant. Please consider helping John and give him the gift of life.

Please continue to pray for both Ally and John.
Sincerely, Shane and Jill

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Thu, Mar 10, 2005 10:00 PM
This week has been Ok for Ally. Her liver is doing well, and her feeds are now at 18cc/hr. Still weaning her sedation meds, it looks like that will take till the end of next week to get rid of all of them. Ally's wound is about the same, maybe a little worse from when I last updated. Her wound opened up enough now that you can see part of her bowel. The docs are using a binder (sort of wrap that pulls her incision site together). This will help the wound from opening further, and also promote faster healing. The wound could take a few weeks to heal.

Other than that, its been an exhausting week. Ashley has been keeping us busy, with her visits here at the hospital. She really enjoys seeing her sister, so we try to have her here as much as we can.

Before I leave to get some sleep, I thought I'd share a poem I read today about organ donation.
Shane

"To remember me"

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has ended. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.

Give my sins to the devil.

Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

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Sat, Mar 5, 2005 5:00 PM
Ally is doing well. She is currently working on her feeding. She is at 9cc and hour. This will be a slow process, but the docs feel confident we will get there. Ally's liver is also doing well. Her bilirubin level is now 0.6 That is amazing!! Overall she continues to be haapy, playful, and wanting to tear off all her attachments, IVs, feed tubes etc.

Ally has however had a hard time weening off some of her sedation/pain meds. So she currently is having some withdraw issues, one is she is not sleeping. The only other issue right now is to get Ally's wound to heal. Early yesterday her incision opened up slightly, and is draining fluid/blood. Dr. Dunn however said this morning he thinks it should heal up over the next few weeks. This has been something Ally has always struggle with after surgery, wound healing.

That is all for now, but before I run off to be with Ally, I thought this letter below would be a nice read. It was sent to us, and it really does describe the way we see life with Ally and our family. Just I'd share it with you also. Enjoy. Shane

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Tue, Mar 1, 2005 3:40 PM
Ally went to the OR today to have her splint removed that was left over from her transplant surgery, and also to see if they could place a G-tube.

She is back resting comfortably, the stent is out and the Docs were NOT able to place a G-tube.
They said that her spleen was enlarged (due to her previous liver disease) and in the way of them placing the tube. So they placed an NJ-tube into her bowel and are planning on starting her feeds that way. She will also have an NG tube set to suction to help drain her stomach. Until Ally's gut gets back to where she was before transplant, this will be the means of feeding. We are kinda back where we were a few months ago. It is going to take more time to work back to where we were with feeding. Everyone here though seems confident that we will get there. Its just going to take time. Imagine that, more time. That's our Ally:)

That's all for now, we will see how the feeding goes now through the night and over the next few days. Take Care.

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